An Unwanted Journey: Day 0068 - Kegel

It was the second time that I heard someone mention that phrase – “Kegel exercises”.

He was a friendly guy. Here I was in my blue hospital gowns, one to wear from the back, another to be worn from the front. Little did he know I was naked from the waist down to my lovely grey wool work socks. Why is it that I get these urges to “flash” the other patients in the waiting room?

“So how are you today?” he asked.

“Actually, this has been a tough day,” I said.

“Why’s that?”

“I’ve got a really sore bottom. It’s been tough even to sit down at work. In fact, I had to leave work just after 12:00 today. I couldn’t sit. I couldn’t stand. And I couldn’t be far from the washroom.”

“Oh, yeah. Well thank goodness I’m only being treated for prostate cancer”, he replied.

It’s amazing how quickly the rapport develops with other cancer patients. In just under four minutes we knew about each other’s cancer battle, and I had been given my second lesson on Kegel exercises. He had done a “million” of them before his surgery and was able to avoid the dreaded urinary incontinence many prostate cancer survivors are told to expect.

My brother-in-law had told me earlier about his brother’s battle with prostate cancer and his use of that mysterious “Kegel exercises”. In his brother’s case, he could even enjoy non-ejaculatory orgasms with his wife after surgeons removed his prostate or, as my brother-in-law put it, “All the fun without the mess.”

Dr. Arnold Kegel devised exercises to strengthen the pubococcygeus muscles. They are, appropriately enough, named the Kegel exercises. They are sometimes call “pelvic floor” exercises. It really doesn’t matter what they’re called, what they claim to accomplish is more important. With these exercises, if you are a man, you can control urinary and fecal incontinence, have orgasms without ejaculation, have multiple climaxes during sexual activity, and perhaps even enlarge the length or width or your penis. This last claim is courtesy of all those “interesting” unsolicited email messages I get each day. When you do these exercises, some of which have the inglorious name of “cock pushups”, you may not even need Viagra as you get older.

No, for me, on this particular day, it’s anal sphincter control that occupies my mind. Today was tough. I really couldn’t stay in a seated position, unless it was on the coccyx cushion which unfortunately I had left at home. Even worse, my ass hurt like blazes today, especially when I tried to defecate. In addition, the urgency was almost too hard to control sometimes.

But it seems that these same Kegel exercises, so good for women after childbirth, so useful for men before and after prostate surgery, may help alleviate some of the worries about fecal incontinence. It gives the phrase “tight ass” a whole new meaning!

An Unwanted Journey: Day 0067 - Memories

I walked through the doors of the GRRCC this morning for my first appointment of the day. Six appointments! A blood draw in the chemo suite. An introductory education session on cancer related fatigue. A consultation with a medical oncologist. Another appointment in the chemo suite to replace the weekly supply of 5-FU in my “baby bottle”. My 16th radiation treatment. A consultation with my new radiation oncologist and his supportive care coordinator.

But what made the difference today was having my Windows Mobile Device (a Toshiba e830) with me and access to the Internet. I could download email, check out my appointments on My CARE Source, browse AvantGo news articles, read Stephen King’s ebook On Writing: Memoirs of a Craft, check out NBA scores and stories…in other words, remained occupied while waiting for appointments.

My blood counts are good. The medical oncologist says I’m doing far better than average in responding to the chemotherapy and radiation therapy. The radiation oncologist confirmed that my side effects are par for the course and that I am managing them appropriately.

That’s the good news. What’s not so good is that it my sore anus will stay this way for the duration of the radiation treatment. Six months from now, I might even notice loss of sphincter muscle control resulting from the radiation I have received. That news stinks!

Still, in just 17 days, the PICC nurse will take out the line and bandage up the hole in my arm. I’ll be able to have showers again, lift weights without restrictions, and not be carrying that nuisance bottle with me everywhere I go. I might even be able to sleep on the right side of my body again!

Not everything will be normal again. That would be too much to ask. I’ll still have this pain in my ass. And I’ll still have surgery to anticipate six weeks later. But the side-effects of preoperative treatment will gradually dissipate and I’ll begin participation in the Tools for the Healing Journey program. I’ll have important projects at work to occupy my days and my family and my writing to occupy my evenings.

One of those writing projects will be the beginning of my memoirs, something that has always seemed pretentious to me until now. Now, because of the incentive of writing this blog and because of the reading I’ve been doing about writing in general, I feel ready to write about myself, my experiences, my memories, and maybe even my ideas and beliefs. I started this weekend with my very first memories as a young child. Because of the Internet resources available to me, I can use those memories as vantage points to think about and write about the context for my memories.

Here’s one quick example. My oldest memory is of crawling into bed with my Mom and Dad and watching TV on our family’s very first black-and-white television. That memory led me to investigate CKVR-TV, channel 3 and the beginnings of television broadcasting in Barrie, Ontario in 1955. To have done this kind of research before the advent of the Internet would have entailed too much work for a lazy guy like me. Now, it takes just a little effort and a modest sense of curiosity. Besides, it’s fun!

I still haven’t decided how to publish my memoirs. Maybe I won’t even bother. But there are some possibilities worth considering, one of which is an Internet site dedicated to helping individuals collect and write their memories – The Remembering Site. Another is simply to use my blog. The trouble with that is that doing so would violate the nature of my blog site. Autobiographical entries would necessarily involve using names of family members and other people central to my story. I don’t know. It’s something I’ll have to consider carefully. But for now, I can just get to it and worry about publishing later on.

An Unwanted Journey: Day 0065 - Cellular Soup

Alistair Cunningham’s research continues to inspire me.

His book, Can the Mind Heal Cancer, which I mentioned on January 15th, was my companion again last night when I couldn’t sleep. I read about his correlative, prospective study on influencing the course of cancer for terminally ill patients. The goal was to establish a correlation between level of involvement in his healing journey program and longevity among patients being treated for metastatic breast cancer, colorectal cancer, and prostrate cancer. My goal is simpler. If there is strong evidence supporting a link between significant psychological change and longevity, then I want to know about the link and put the program into practice.

As I mentioned to my wife this morning, there was one aspect of what I read last night that stuck with me. Cunningham has described the internal environment in which cancer grows in the body as a cellular soup. The point he made which most impressed me is that if one has been diagnosed with cancer, then whatever one’s overall health, whatever one’s personality, whatever one’s support among friends and family, cancer has found a way to prosper in that person’s cellular soup. There is no blame cast in saying this. It’s just a statement of reality.

So, unless something changes, cancer will continue to grow and find a hospitable home in that cellular soup. Conventional medical intervention can make a difference, of course. We can blast the tumour with radiation, attempt to weaken the cancer cells with chemotherapy, and ultimately remove the affected tissues surgically. But if nothing else changes, if the individual’s cellular soup remains the same, the chances of recurrence are high.

If I am to win my fight with cancer, then I cannot remain an observer of medical treatment. I must be a participant in changing the internal recipe for my own cellular soup. The change must be significant. In fact, if one examines the evidence in Cunningham’s studies carefully, the change required for substantial improvement in quality of life and longevity demands a complete life commitment.

My questions for today are simple: “Can I do this? Will I commit to this?”

An Unwanted Journey: Day 0064 - Fatigue

Side-effects are a tricky business for the cancer patient. Until there is something devastatingly obvious, you’re never quite sure whether what you are experiencing is related to the treatment, a sign or symptom of the underlying disease, an effect of some totally unrelated process in the body, or a heightened sensitivity to everything happening in the body simply through watching for symptoms.

Here are some examples from my own experience in the past three weeks.

About one week after starting radiation and chemotherapy, I had a bout of diarrhea which was fairly dramatic but only lasted for about 45 minutes on a Friday evening. Then again, last night, I had another bout of diarrhea which lasted a little longer (for several hours), but appears to have disappeared again this morning. Are those bouts related to radiation treatment? Probably not. There is another suspect…sub sandwiches. In both cases, at lunch I ate a submarine sandwich, one tuna, the other a vegetarian sub. It’s very likely there was something that reacted poorly with my digestive system, perhaps because it is more sensitive than before treatment began.

Fatigue is another example. Tuesday this week, as I indicated in my blog entry for the day, I was so tired in the afternoon that I couldn’t concentrate at work. But Wednesday and Thursday I felt re-energized simply through having naps in the evening and exercising with my physical trainer on Wednesday morning. Fatigue is almost certainly related to treatment, but that doesn’t mean a particular instance of being tired will continue indefinitely.

Tenderness in the anal tissues is another. Again, this is almost certainly related to the radiation treatment. But I’ve noticed that using a 0.5% hydrocortisone non-prescription cream has all but eliminated the worst of that tenderness. Even though this side-effect will probably continue throughout the balance of treatment, it might not be too bad.

Being proactive is certainly one of the best approaches to side-effects. The Grand River Regional Cancer Centre has a 3-part training session on dealing with fatigue. I registered for those Monday morning sessions yesterday just after receiving my 14th radiation treatment (half way, yeah!).

Being gentle with oneself also helps. Although there are people I’d like to see and things I’d like to do, I’ve come to accept that when fatigue or other side-effects strike, it’s best to simply acknowledge that social activities are less important that rest.

Having people to speak with about side-effects is also important. I’m fortunate to have a parish nurse who keeps in regular contact with me and who listens to my concerns. In addition, she knows my support network at the church where I sing with the choir. She recognizes the impact of spirituality as well on overall health. In addition, I have a Community Care Access Centre nurse who visits me every Friday and asks about side-effects (as do the radiation therapists every day and the nurses in the chemo suite every Monday). I also have a sister-in-law who is very familiar with hospital processes and quality systems and who advises me on such issues.

Then, of course, there is my wife without whom I can’t imagine dealing with any of this as well as I have. She is a constant support and friend. She and my sons provide a family life that is incredibly fulfilling and health giving. So, I think I can handle a little fatigue and a sore bum. No problem!

An Unwanted Journey: Day 0061 - Tired

What to do when you’re tired?

I don’t know. Don’t ask me. I’m too tired to really care.

This afternoon, that’s exactly how I feel – drowsy, my eyelids are drooping. I find it difficult to even lift my wrists a little when I’m typing. Is this because of the radiation and chemotherapy or am I just a slouch? I suspect it’s the treatment I’m receiving. The radiation oncologist told me as much when I had a consultation with him this afternoon.

But we’re only at Day 12 of 28, for God’s sake! “It’ll get worse,” is what he told me.

Last Friday, I felt like I could take on the world. I even wrote about it. Today, all I want is a nap.

But what about my attitude? Can’t I do something to perk up and fight this?

Who knows? Maybe tomorrow.

An Unwanted Journey: Day 0060 - Writing

I am reading Writing Down the Bones by Natalie Goldberg, a Shambhala pocket classic that I purchased Sunday afternoon at Chapters in Kitchener after our birthday celebration meal for our youngest son at Boston Pizza. Already I get the impression of how Zen informs her writing practice and could inspire my own. Her chapters don’t necessarily flow from one to the next. In a way, they have a similar shape to what I do in writing blog entries. Each one is a self-contained piece that may or may not relate to other entries. This is reassuring to me. She advocates a practice and a writing style that resonates with the way I already write.

Natalie Goldberg uses spiral-bound notebooks and a fountain pen for her daily writing practice. I much prefer my notebook computer because it is easier for my thoughts to flow from mind to screen. But there is something naked about a notebook and a pen. Computers have so many distractions – email, applications, and instant messaging. But a pen and paper, well chosen, are tools without inherent distractions.

The discipline (a word Goldberg doesn’t like to use in connection with writing) is about simply writing, regularly, using all kinds of subjects, and without censoring. I get the impression from her that writing as a practice is very much like Zen sitting practice (zazen) in which just being there is fundamental to eventual success.

There are very few teachers anywhere who require so little. Perhaps it’s because the simplicity is misleading. It is actually much more onerous than first appearances suggest. Simply being here, wherever that may be, is a lost art in western society. I’m not complaining about our tendency to multi-task everything. In fact, I’m a strong advocate of using technology to do precisely that. But there are dangers in letting technology dictate every aspect of how we perform our everyday activities. One danger is forgetting how to be alone with our thoughts and feelings, something which writing can do, if we let it.

Today, I begin my third week of radiation and chemotherapy and find myself apprehensive about the cumulative effects – I have begun experiencing discomfort in the anal tissues, something which the radiation therapists say is likely to continue for the duration of treatment. Writing will continue to be a major means of coping for me.

An Unwanted Journey: Day 0059 - Birthdays

Birthdays.

Tomorrow is my youngest son’s birthday. He’ll be seventeen, starting his eighteenth year. I can hardly believe it. So much ahead of him. So much already behind him. This time next year, he could already have submitted his applications for university.

Today, he opted to go out for a celebratory feast with the family at Boston Pizza and to receive his gifts from his brother and from my wife and me. Not a bad choice considering that tomorrow is not only January 23rd, his birthday, it is also election day in Canada. Just a year-and-a-half ago we were in Ottawa for Canada Day during the last federal election. We saw the prime minister and his wife, watched the fireworks on the banks of the Ottawa River, visited with my nephew, toured the museums and galleries, and had an early celebration of my eldest son’s seventeenth birthday.

What a difference a year and a half makes. Now it looks like we’ll have another party in power, another prime minister, and one of the most challenging years our family has ever faced together. By the time my wife’s birthday and my own birthday arrive in May and my eldest son’s birthday in early June, I will have undergone abdominal surgery and started a second round of chemotherapy in my fight with rectal cancer.

There has been a major shift in the way I think about birthdays. Ever since the diagnosis of cancer, I find my attitude about family birthdays is simple – I just want to be there. BD, before diagnosis, I wouldn’t think much at all about birthdays. I expected to be there, for quite a few years at least. Now, celebrating another family birthday is a blessing with unanticipated dimensions. Being there isn’t something I can realistically take for granted any longer. If I am, then that in itself makes it special.

Just a few days from now, we will be celebrating the 250th birthday of Wolfgang Amadeus Mozart (January 27th). I’ve never really expected that anyone would be celebrating my birthday 250 years from now, even though I’m sure most ambitious people secretly harbour a hope that immortality of that kind is possible. Instead, over the years I’ve come to realize that the most significant contribution I can make towards my own immortality is living the life I am given as fully as possible. This was BD. But now, AD (after diagnosis), that life lesson has a pronounced poignancy.

An Unwanted Journey: Day 0058 - Two sitz, a haircut and a funeral

Two weeks of radiation therapy are “under my belt”, so to speak.

I ran into the radiation oncologist in the halls of Grand River Hospital yesterday and he stopped to see how I was doing. Ironically, despite everything else going very well, yesterday was the first day that I had a side effect worth mentioning to him. It’s not something you mention in casual conversation, but then again, neither is rectal cancer!

“Well, I have a sore anus. But I’m not sure if that’s related to the treatment or just a coincidence.”

“Oh yeah, that’s definitely a side effect of the radiation treatment. Try a sitz bath, for sure, and consider purchasing one of those special pillows you can find in a lot of drug stores to take pressure off of the anal tissues. And make sure you mention this again when you see me on Tuesday for our consultation to talk about medicinal remedies we could try. Have a good weekend.”

Last night and again today, I tried having sitz baths. I realize that Europeans are used to the bidet. But for typical North American guys, I’m betting having a sitz bath for the first time is, at the very least, an odd sensation. The warm water is soothing and effective treatment for what I’m experiencing, but like most guys, just sitting there in warm water for 15 to 20 minutes seems like a lifetime.

While doing errands Saturday morning, we stopped by our local Shoppers Home Health Care store and shopped for a coccyx cushion. Now this device is something I could easily get accustomed to quite readily. In fact, I made very good use of it today while snoozing during the NCAA basketball games on TV in the afternoon. The coccyx is the technical term for what most people call the tailbone. A coccyx cushion, as is obvious from the name, is specially designed to relieve pressure on the tailbone while sitting. But for rectal cancer patients the coccyx cushion also serves to relieve pressure on the anus itself.

Radiation treatment for rectal cancer is meant to target tumours in the rectum, but there is only so much technology can do to limit damage done to healthy tissues in the general vicinity of the radiation field.

But despite this first definitive side effect, I’m feeling great. Last night, I actually sat through an entire movie (Brokeback Mountain) without once having to leave for a bathroom break. That was a major accomplishment for me and something I haven’t seriously considered for a few months. Today, I was able to attend a funeral for the father of our choir director, followed by a haircut and other errands, again all done without the need for a bathroom break. Almost like a normal person!

Only l8 more radiation treatments to go!

An Unwanted Journey: Day 0057 - Work

Work is a blessing. Not just any work. Not just work in the sense of distraction, although even that has merit when we’re talking about a life-threatening disease like cancer. No, I mean my work is a blessing, what I do for a living, what I actually work upon is a blessing.

Not everyone can claim they enjoy their work, no matter what their current state of health. But I can. I am an information technology manager at a local manufacturing company called Pano Cap Canada. Our company produces plastic caps for the food and pharmaceutical industries. You’ve seen and used our products for many years, although perhaps never realizing that the cap to your peanut butter jar, or to your ketchup bottle, comes from a relatively small manufacturer in Kitchener, Ontario.

If our information systems are working well and if our workers are skilled in the use of those systems, we do a better job of servicing our customers and keeping our staff happy. So, even though I don’t participate directly in the production of caps, my responsibilities can dramatically affect productivity, customer satisfaction, and employee morale. So, my work is significant.

But even that is not enough to explain why work is a blessing to me. Having significant work with serious responsibilities is not enough for many. One must look forward to each day, to the contributions to be made that day, to helping both the company and the individuals who work for the company achieve their goals. One must find fulfillment in the daily activities in which one engages. One should find a measure of satisfaction in the social relationships and the opportunities for both professional and personal development. One must have all these things in order to find work a blessing.

I’m one of those lucky ones.

We’re closing in on the end of the second week of radiation and chemotherapy in my battle with rectal cancer, and I have to admit that I really do feel good. There have been very few side effects thus far and a noticeable diminishing of blood in the stool and frequency of bowel movements, so much so in fact, that my wife and I will actually go on a date tonight to see Brokeback Mountain at the cinema, something we haven’t been able to do for a long time.

But a large portion of why I’m feeling good these days is because of my work. My radiation treatment is at the Grand River Regional Cancer Centre. It takes me approximately one hour to drive there, get the treatment, and then return to work. The rest of the work day is reasonably normal. So far, fatigue only begins to affect me in the evenings, thereby sparing me problems of concentration at work. In other words, my treatment doesn’t interfere with my work as IT Manager, while my work contributes to my sense of fulfillment and accomplishment. This is a very good thing and I am grateful.

An Unwanted Journey: Day 0054 - Tools for the Journey

Lucky for me, HopeSpring’s core program since opening in 1995 is based on Alistair Cunningham’s material (see Day 0052). Today, I enrolled in what HopeSpring calls Tools for the Healing Journey. I’ll be learning about deep relaxation, stress control, mental imagery and lifestyle management. Unfortunately, I won’t make it through the entire 6-week program because it will be interrupted for me by surgery at the end of March or early April. In the meantime, there is nothing to prevent me from going through the freely downloadable PDF file available from Cunningham’s healingjourney.ca web site.

Some of that material is prosaic. Controlling our diet, as part of lifestyle management, Cunningham states, may benefit the cancer patient primarily through “giving ourselves a very powerful psychological message about our determination to do all we can to fight the disease”. On the other hand, he argues that there is much more evidence that diet plays a significant role in promoting cancer in the first place than in affecting the progress of an existing cancer.

From what I’ve read so far, I’ve already taken initiative in some of the areas Cunningham recommends. What I feel least prepared for is mental imagery. Visualization has never come easily to me. Theoretically, I know that actively visualizing scenarios has proven beneficial to athletes, actors, performers, even ordinary people preparing for speaking engagements or important meetings. Theoretically, I understand all this. But practically, it just hasn’t been something that I feel competent to do with enthusiasm.

Deep mental relaxation, or meditation, is something that I feel quite confident about. I’ve had training in transcendental meditation, yoga, and Zen, not to mention centering prayer and other forms of Christian contemplation. From both an academic or theoretical perspective and a practical perspective, meditating is something which will come naturally to me.

So, too, with goal setting and lifestyle management. Undoubtedly, there will be specific recommendations related to the life threatening aspects of battling cancer, but I feel confident in my ability and competence to take those recommendations and act upon them.

One other area that I feel hesitant about is the whole arena of emotional expression. Maybe that is because I’m simply not good at dealing with my emotions. Maybe it is because I need more help in this area than in any other. But, who knows? Maybe I’ll be able to leverage something I am good it – expressing my anger and frustration – into something more useful and therapeutic.

An Unwanted Journey: Day 0052 - Alistair Cunningham

So far, nobody at Grand River Regional Cancer Centre has recommended or even mentioned mental therapies as an adjunct to the conventional medical treatment I am receiving for rectal cancer. This isn’t surprising, I suppose. The centre is new and mental therapies are not what most would call standard approaches to the treatment of any chronic disease.

But the largest cancer research organization in Canada, the Ontario Cancer Institute, located at Princess Margaret Hospital in Toronto, is host to one of the most important scholars in the world with a primary research interest in such therapies – Dr. Alastair J. Cunningham.

I purchased a very recent publication by Cunningham yesterday at Chapters in Kitchener – Can the Mind Heal Cancer? – A Clinician-Scientist Examines the Evidence. I didn’t do so because of a prior knowledge of Cunningham, his work, or even the fact that a Canadian is a leading researcher in the area. I was merely browsing the cancer section of the bookshelves, looking for Syd Birrell’s Ya Can’t Let Cancer Ruin Your Day. As it happened, I found and purchased both books.

As I began reading Cunningham’s most recent book, I realized that I had already discovered and failed to follow up a web site designed by the Ontario Cancer Institute, Princess Margaret Hospital, and the University Health Network called The Healing Journey Program. I went back to the site, bookmarked it for later reference, and downloaded the PDF file Healing Journey, Level 1 Workbook. They are all part of the resource materials for which Alistair Cunningham is responsible – the book, the workbook, the program, the web site.

Tomorrow, I will check the resource centre at the GRRCC to see if the CDs and video cassettes of the program are available to cancer patients. If not, I’ll simply use the workbook, order the audio CDs, and consider participating in the workshops held at Princess Margaret Hospital in Toronto.

An Unwanted Journey: Day 0051 - Irradiated Man

One week of treatment is over.

This week has been all about radiation – 5 sessions in radiation treatment room number 3 of the Grand River Regional Cancer Centre. Each time, I get up on the couch, lie face down and listen to the radiation therapists compare numbers, sometimes positioning my body to match the specifications in the planning images. Then they usually say something like, “OK, Don, that’s perfect. Now don’t move. We’ll be back in a few minutes.”

After that, being face down, all I can hear is the sound of the Clinac 21 EX linear accelerator machine from Varian Medical Systems moving around my body into 3 different positions to cover the 2 sides and the back of the pelvis, generating the sound I have come to recognize as part of the shaped radiation beam penetrating the skin and organs of my body in an effort to target the tumour and possibly infected lymph nodes.

Thursday afternoon, since I was the last patient for the day, we had time for a demonstration of what actually happens. The machine, worth about $4 million and surrounded by highly insulated walls, ceiling and floor, employs a technology called intensity-modulated radiation therapy (IMRT) and something Varian calls SmartBeam, which refers to the way the company’s machinery shapes and modulates the treatment beams to maximize the dose delivered to the tumour while sparing, as much as possible, normal tissues. The photograph with today’s blog illustrates an example of how the beam is shaped with the plates being adjusted according to computer programs which reflect the design of the treatment planned by the radiation oncologist.

The technology, even for an information technology manager like me, is incredibly complex. I could never hope to get a detailed understanding of the technology during my treatment cycle. The best I can hope for is some appreciation for the principles involved.

Radiation oncologists are motivated by a desire to increase cancer cure rates and to reduce unnecessary toxicity from treatment. Improvements in radiation technology are currently geared towards modulating dosage. Varian’s Clinac machines, for example, come with up to 300 upgrade options. The machinery and its options provide the radiation oncologist with variables for maximizing doses for rapid patient treatment. They are also intended to stabilize and even lower cost per patient treatment.

Using IMRT techniques, there is growing evidence that local tumour control is improving. For prostate cancer, for instance, IMRT has doubled the rate of local tumour control over conventional radiation therapy and reduced complications for normal tissue from 10 to 2 percent.

I haven’t found studies specific to IMRT and rectal cancer yet (maybe I haven’t looked hard enough), but until Friday evening, I had no side-effects at all from 5 fractions of radiation therapy. Friday night, approximately 5 hours after treatment, I experienced a dramatic case of diarrhea which, fortunately, did not continue today.

Clearly, the effects of both low-dose 5-flurouracil and radiation treatment will do something to my body. The effects accumulate, so I expect further side-effects as the treatments continue. But, thus far, it has all been quite manageable.

An Unwanted Journey: Day 0046 - First Treatment

I may have to be more careful about what I listen to on the radio while driving to treatment at the Grand River Regional Cancer Centre these days (GRRCC). But it was strangely compelling material that Shelagh Rogers and Syd Birrell were discussing – Ya Can’t Let Cancer Ruin Your Day, a book of emails from Syd about his young son’s battle with a malicious form of cancer called neuroblastoma. I tried to tell my wife about the interview when I met her at the GRRCC, but found that the words caught in my throat and I couldn’t finish – the first of three times during the day when tears caught me unexpectedly.

I will purchase the book, but will have to be judicious about when I read. Today, for instance, despite my eagerness to get treatment underway, I found myself almost suffocated by cancer treatment and the reality of my situation. There were so many appointments, so much information, so little personal control over anything that was being done to my body…everything was just too much.

We started with a blood draw in the chemo suite followed quickly by a teaching session with one of the pharmacists in something euphemistically called a “quiet room”. This was all about 5-FU (fluorouracil), side effects, the kind of Baxter “baby bottle” pump I would be wearing (this was unexpected; I was told earlier that I would have a pump in the shape of a money belt with a keypad protected by a password, something far smaller than the “baby bottle” with a hip pouch which I now have), and the rate of flow by which the 5-FU will enter my blood stream (1.5 ml / hr).

We had time for lunch in the hospital cafeteria and a quick visit to the computer/resource centre (which doesn’t allow for access to My CARE Source, unfortunately, nor for outside access through Remote Desktop, something I need to get into the corporate network where I work most of my days) before on to the 5-FU infusion. The oncology nurse hooked me up very quickly and then presented me with this “baby bottle” which I will have connected to me for the next 6 weeks. She showed me how to care for the bottle and offered suggestions for how to wear it. She also showed me my blood test results from earlier in the day; evidently my liver function and kidney function are both good. My ANC (absolute neutrophil count, calculated by multiplying the total white blood count times the neutrophil count) is well within the appropriate range for chemotherapy.

And then it was on to radiation therapy. Again, I felt my emotions right at the surface – so little control, such a sense of both unreality and super-realism to everything happening around me, and incredulity that all this was being done “to” me. The radiation procedure and machine are impressive and the treatment painless. There were no expected “blocks” on the treatment bed since those are now built in to the machinery itself and controlled through computer software settings. These blocks are about 6 inches thick and made of an alloy that includes the expected lead protection. I get three “blasts” of radiation each day, one to the back of the pelvis and one to either side.

But it wasn’t over. We then moved on to the pharmacy to pick up an anti-emetic to combat nausea if I encounter that side-effect, a “spill” kit for the chemo, some special cream to treat the skin at the location of the radiation fields, and a special pouch to hold my chemo bottle. We picked up more “veterinary” gloves for bathing, collected our literature, hoisted my notebook computer and left for home. In the parking lot, though, we met an acquaintance surprised to see us at the hospital. It was the third such encounter of the day, one of which was another patient in the cancer centre itself, someone who was the crossing guard for our children in kindergarten.

We went home, unpacked all the pharmaceutical products, tried out various ways of securing the chemo bottle, took my temperature with the digital thermometer provided by the GRRCC pharmacy to cancer patients…and then I crashed for a while, sleeping for about forty minutes.

This was a tough day, but my wife was very supportive, helping me bathe in the evening, shopping with me to get appropriate shirts that would work well with the apparatus I have to carry everywhere with me, preparing my supper, and helping me remember everything that happened today. I don’t know how I could handle all this without her.

Tomorrow (Tuesday), it’s merely a physical with my family physician, a consultation with the radiation oncologist, another trip to the pharmacy for my medical supplies, and…oh yeah…more radiation therapy.

An Unwanted Journey: Day 0045 - Day Before Treatment

This is the final day before treatment. Diagnosis, although not complete until the post-surgical pathology report, is as complete as it can be. I’ve had all the important tests and images, the insertion of the PICC line, my medical team is in place with a well-conceived plan ready to implement, home nursing is already attending to my needs, friends and family and colleagues are aware of what I will be going through and many have been incredibly supportive, I’ve started a nutritional plan and a physical training plan with clear objectives…everything is ready to go.

No doubt there will be a few more surprises, maybe some side effects to cope with, possibly some surgical complications, and undoubtedly some tough days when my spirits are low. But I feel ready, in fact eager, to begin treatment. Apart from the occasional moments when I still find myself thinking, “What? Me? Cancer? You got to be kidding!”, I’m approaching this with real optimism and a solid belief that I can beat this thing.

Here we go!

An Unwanted Journey: Day 0044 - PICC and pickin'

Medical Stuff
Today (Saturday), the Community Care Access Centre of Waterloo Region (CCAC) nurse came to our house to change the dressing and flush the line for the PICC catheter (peripherally inserted central venous catheter). Since this was the first visit from the CCAC (delivered through CarePartners), we had to go through another health questionnaire. We also discussed the details of how often nurses would be visiting me at home to change the dressing. Evidently the chemotherapy nurses will flush the line weekly when I visit the Grand River Regional Cancer Centre (GRRCC) on Mondays, but the CCAC nursing team will visit me at home once a week to change the dressing, probably on Friday mornings.

My wife and I watched the procedure carefully, just in case we have to perform the procedure ourselves. It is a sterile procedure which means that the nurse and patient both have to wear masks (I only have to do so if I want to face the nurse and watch the procedure, which I do). Removing the tape, swabbing the insertion point in gradually larger circular movements first on-time with hydrogen-peroxide and a second-time with povidone-iodine, allowing time for drying, and then reapplying the see-through tape are fairly straightforward. There is no pain involved except for the removal of bandages which usually means pulling out hairs on the arm.

The PICC line I have in place uses a needle-less injection cap (CLC2000®). This prevents blood from backing up into the catheter as well as enabling the delivery of fluids and medications into the blood system. The line itself has a single lumen (central channel in the line). The nurse uses a syringe from a medical kit which I pick up from the home care department of the Grand River Hospital’s main pharmacy. Medical supply kits can be picked up from the pharmacy on Tuesday or Friday afternoons. Each syringe has either a saline solution to flush the line or a heparin solution to prevent blood clotting in the line. Injecting the solutions requires carefully eliminating any air in the syringe and then very gradually injecting the solution. Quick or forceful movements could be dangerous, especially if there is a blockage already in the line which could then be forced out into the blood system.

Home Stuff
I’ve been meaning to play the guitar for quite a while now, but realized this morning when I actually took my Tacoma Chief (C2C) out of its case that I hadn’t touched it since being diagnosed with cancer in late November. Prior to that, I had been practicing my fingerstyle Christmas songs and carols. Today, however, my fingers could only take a few minutes of play. This may be a good thing; I am forced to think more about music and music theory if I want to get back at the guitar. Today, for instance, I found myself running through chord progressions and trying to write out chord frames and progressions on sheet music. I’ve never done this seriously before, so maybe my illness will be the occasion to try on something new with the guitar.

A good friend, whose father passed away from colorectal cancer and who has been writing to me regularly since my diagnosis, has been forwarding photographs of his guitar and amplifier collection. These are primarily investment opportunities for him, but I’m sure the pure aesthetic delight of seeing these one-of-a-kind beauties is just as important to him. He certainly has me salivating over some items in his collection.

In any case, I’m hoping now that I’ve actually picked up my guitar again that some of the shock of my diagnosis has diminished and that I can enjoy music wholeheartedly again. Instead of the PICC line, maybe I can concentrate more on picking the guitar.

An Unwanted Journey: Day 0043 - PICC Insertion

It was a long day at the Grand River Regional Cancer Centre, probably the first of many such days.

It all makes sense in retrospect – an early lab appointment for a baseline blood draw, followed by about a 90-minute delay until I saw the PICC line (peripherally inserted central venous catheter) nurse. That time was required for the systemic oncologist to see the blood measures and approve moving ahead with the PICC insertion.

The insertion of the PICC catheter was more involved than I anticipated as well. It required a sterile environment that was novel for me. The PICC nurse had to find a vein that would work; unfortunately mine was on my right arm even though I am right-handed. Thank goodness most of my work is at the computer keyboard. Then, she had to don special gloves, mask, and gown, measure the distance from the vein she had chosen up my arm to a position just above the heart. After cutting the length of catheter required, she had to sterilize the site for the insertion, freeze it with a local anaesthesia, insert the catheter, flush the line with a saline solution (which I tasted almost immediately), followed by another flush with a solution of heparin (which I smelt almost immediately).

After she was assured that I was alright, an orderly took me in a wheelchair for X-rays of my chest to ensure that the PICC catheter was in exactly the right location just above the heart. If it was too long, she would have to cut some off the length; if too short, she would have had to re-measure and re-insert another line. As it turned out, this PICC nurse knew her craft perfectly and had measured precisely what I needed as verified by the X-rays.

I then had to visit the hospital pharmacy to pick up a starter kit for taking care of possible spills as well as changing the dressing and flushing the line. Saturday morning, I will be visited by a Community Care Access Centre of Waterloo Region nurse who will demonstrate the changing of dressings and flushing the line.

One of the things the PICC nurse and I discussed was what activities I can and cannot do during the next 6 weeks while the line is in place. Basically, I can’t shovel snow, I can’t sweep floors, I can’t vacuum the carpet – I can’t do weight training exercises that involve the arms in any serious way. No curls, no lunges, no woodchoppers, no push-ups, no bench presses. My trainer and I will have to adjust the core training regimen somewhat. The squats should be alright as will the sit-ups on the stability ball, the Roman chair knee raises, and bosu squats. I’ll schedule an appointment with a physiotherapist on the system oncologist’s team to ensure I don’t do anything potentially damaging to the PICC line.

Infection is the chief worry. Draining from the exit point that is clear, yellow, or green requires seeing one of the CCAC nurses as soon as possible. Any fever requires an immediate visit to either the GRRCC or the hospital emergency department. Finally, redness around the insertion site could lead to phlebitis, but can be controlled with warm, moist compresses applied every 2 or 3 hours.

Waiting is boring, there’s no doubt about it. But today I was able to read through both the chemotherapy and radiation therapy booklets provided for patients by the Canadian Cancer Society as well as the additional booklet about Caring For Your PICC Catheter from Cook (Canada) Inc.

This weekend is the end of the pre-treatment phase. Monday I start both chemotherapy and radiation therapy.

An Unwanted Journey: Day 0042 - My PICC

Tomorrow is the final preparation before treatment begins. There will be a blood draw in the lab as well as the insertion of the PICC (peripherally inserted central catheter).

The blood work will provide a baseline for the efficacy of the chemoradiotherapy, monitoring haemoglobin, platelets, red blood cells, alkaline phosphatase, carcinoembryonic antigen, creatine, and many other measures. I will be able to monitor these weekly scheduled measurements through My CARE Source online.

The PICC line is plastic tube which will be inserted into a hole created in a vein with a needle near the bend in the elbow. The tube is then pushed through until the tip is close to a large vein just above the heart. It is likely that I will then have an X-ray to ensure that the PICC is in exactly the right location.

There are a variety of reasons to have a PICC for the cancer patient. One reason is to avoid constantly using needles to draw blood. Another is to make it easier to provide chemotherapy and antibiotics directly into the blood stream, especially where the drugs can be quickly diluted by fast flowing blood in one of the major veins near the heart.

The PICC will probably be in my arm for a few months, being flushed and the dressing changed weekly. There are some potential medical problems such as infection or clots, but the advantages seem very clear to me. Exercise, dressing and undressing, showering, etc. may be uncomfortable. If I’m lucky, my personal trainer may figure she needs to be more lenient with me in our training sessions.

An Unwanted Journey: Day 0041 - Tattoos & Training

Normally I refuse to make New Year’s Resolutions. But here’s one that works – this year I resolve to be the first person in my immediate nuclear family to get a tattoo. OK, there’s one resolution that’s already implemented.

Today was my radiation planning and simulation at the Grand River Regional Cancer Centre. It began with an orientation session with an oncology nurse who explained what they were going to do, why the procedures were done this way, and what to expect as I entered the room where the radiation oncology CT scan machine is located. She also gave me one of those wonderful contrast solutions to drink similar to those I had to consume for my previous diagnostic CT scan and MRI.

So, for yet another of what will undoubtedly be many more exercises of undressing and putting on those flimsy hospital gowns, I prepared for the procedure. When I entered the room with the CT scan, another technician took my photograph with a digital camera and then asked me to lie face down on the CT scan bed. I had to maintain that position for about 20 minutes or so, not the most comfortable of positions, especially since I couldn’t see anything and had my buttocks exposed to the world. I guess dignity flies out the window during rectal cancer treatment. This isn’t a complaint about the nurses and technicians. They do everything in their power to make the patient feel comfortable, but this isn’t exactly what I had in mind when I’ve fantasized about two women asking me to get undressed.

They had to position me a couple of times on the table to eliminate any twisting of the torso, followed by a pilot scan. After that, they marked the middle of the back of my pelvis and the sides with a marking pen, ran the CT scans, asked me to wait in the face-down position for another 10 minutes while they viewed the photographs, and then proceeded with the tattoo.

The tattoo is really just some small blue dots used to triangulate the location of the tumour and the pelvis where the radiation treatment will be focused. I was a “jumper”. The tattoo on the back was easy, but the one on my left side for some reason caused a nervous twitch. Luckily my “jumping” didn’t require doing the tattoo over again.

Generally, it takes a couple of weeks for the planning of the radiation treatment; this involves the preparation of the blocks and templates used to shield the rest of the body from radiation and to help position the body for the daily treatments. In my case, since the team is moving ahead quickly and because the chemotherapy is to be executed at exactly the same time, the two weeks was reduced to just a few days. Later in the day, I noticed that my radiation treatment schedule was already in place on the GRRCC’s My CARE Source website for patients.

I will be getting about 54.9 Gray (Gy) in 28 fractions for the radiation treatment schedule (The gray is a unit used to measure a quantity called absorbed dose. This relates to the amount of energy actually absorbed in some material, and is used for any type of radiation and any material. One gray is equal to one joule of energy deposited in one kg of a material. The unit gray can be used for any type of radiation, but it does not't describe the biological effects of the different radiations. Absorbed dose is often expressed in terms of hundredths of a gray, or centi-grays. One gray is equivalent to 100 rads.)

A little later in the morning, I had another session with my fitness trainer at Popeye’s Gym. She has me performing a core training regimen that involves lots of stability exercises, abdominal exercises, stretching, squats, push ups, lunges and other assorted exercises. She indicated that it is a fairly advanced routine. I’m progressing reasonably well already, increasing repetitions and the weight for various sets. But by the end of our session, I felt like I’d like to go back to bed. Oh well, just another 12 weeks of this torture before surgery. Maybe when all the treatment and training is finished, I’ll see about connecting those dots and getting myself an interesting tattoo.

An Unwanted Journey: Day 0040 - Hostility

In retrospect, there were many ways in which I could have reduced hostility and the resultant harm that inevitably comes from experiences of hostility, either directed outwards towards others or directed from others towards me. I’m not sure such experiences in my life are a contributing cause for my colorectal cancer, but I am sure that living with as little hostility as possible has to be beneficial to one’s health.

So, I’ve chosen to postpone investigating guided imagery until I’ve had further consultations with staff at the Grand River Regional Cancer Centre. Instead, being a verbal guy anyway, I’ve decided to focus my immediate attention on the gentle art of verbal self-defence (see Suzette Haden Elgin’s books, one being Staying Well With the Gentle Art of Verbal Self-Defense).

I’ve already written about arguing with oneself and the means by which we can deflate hostility which we might wittingly or unwittingly direct inwards towards ourselves.

What I haven’t written about in any detail is how the mere fact of writing a journal of both facts and feelings about my experience with cancer is itself therapeutic. All of these things are connected, according to Elgin. Our struggle with language, our commitment to use metaphors consciously, our willingness to debate both external and internal voices – all of these boosts the immune system. And, of course, we know that anything which boosts the immune system is bound to be beneficial to the cancer patient.

Coping with cancer invariably involves feelings of hostility and anger, denial and distraction, blame and fear. Writing about such feelings prevents them from worming their way into our physical structures and doing additional damage to what the cancer itself has already done. So the very act of writing journal entries is a kind of gentle verbal self-defence.

For those who don’t have a comfort level with writing a diary, Elgin suggests some “training wheels” like the following hostility template:

Date:__________

When ___________________________________________ today,
I felt ________________________, because _____________________.

For example, I might use this template to write “When I was told that surgery may cause irreparable harm to urinary and sexual function today, I felt an incredible sense of loss and despair, because nowhere in my research had anyone written that I should expect incontinence or impotence.”

Something happens in doing these kinds of exercises, something soothing and energizing at the same time. Writing about feelings isn’t just about venting. It’s about linking aspects of reality with the emotional life. In the case of the example above, the when clause refers to a verifiable fact. It happened and anybody that was there can verify the fact. The because clause is also a verifiable fact of reality, although here I am speaking about something which I alone have discovered in my research. As long as I am honest, then we have a second fact-based clause. The I felt is the only part of this tripartite template which references the internal life. But most observers should be able to observe the coherence of my internal feelings with my outer behaviour. In other words, it isn’t entirely subjective.

There is a useful discipline here. By creating a linkage between objective reality and subjective reality, I have disabled the inchoate expression of unhelpful and destructive emotions. There is nothing wrong with expressing one’s emotions, but the discipline is about grounding those emotions in observable, objective reality. We move from hostility towards healing.

An Unwanted Journey: Day 0038 - Visualization

“By visualizing the immune system actively attacking the cancerous growth, the immune system is mobilized, strengthened, and its natural antagonism toward cancerous growth is reawakened. In this way, the person participates in his or her own treatment, a kind of psychic biofeedback which increases the will to live.” – from Psychotherapeutic Treatment of Cancer and the Consciousness Restructuring Process, 2000.

I find myself somewhat trapped. If, as seems to be the case with my meandering thoughts, my mind can influence the future of the body, then the corollary appears to be that in the past my mind was already influential in the development of cancer. Not a comforting thought!

But maybe that is the price that must be paid to embrace the possibility of contributing to one’s own healing. After all, conventional treatment hardly ever talks about visualization and meditation, and when it does, it does so in the context of adjusting to one’s predicament. This is most obvious in the hospice setting where the focus for visualization and meditation exercise is on dying with dignity. The attitude seems to be that being at peace emotionally can’t hurt the situation. But implying that a patient may somehow have been a participant in the onset of cancer one might do more harm than could possibly be warranted by quickly issuing the corollary that this means the patient can contribute to his/her own healing. Far easier to simply recommend practices to ease pain and be at peace than to go out on a limb and suggest self-healing has true potency.

Bernie Siegel is one conventional practitioner, a surgeon, whose books demonstrate his willingness to risk the implication of self-blame. He does so because of his conviction that self-healing occurs regularly with what he calls his ECaPs (Exceptional Cancer Patients). Love, Medicine & Miracles and Peace, Love & Healing are two of his books in my library that I intend to re-read right away. Another book which I’ll digest shortly afterwards will be Suzette Haden Elgin’s Staying Well With The Gentle Art of Verbal Self-Defense; she recommends Siegel’s books enthusiastically. Whereas Siegel uses drawings and images as primary tools for self-healing, Elgin uses metaphors and verbal constructs for self-protection and self-healing.

Siegel makes a comment in the introduction to Peace, Love & Healing which helps alleviate the self-blame implicit in recognizing that our thoughts, emotions, and attitudes may have predisposed us to cancer in the first place. In fact, his view is that whatever the truth of that proposition, it is something simply not useful to pursue - something akin to Martin Seligman’s recommendations about arguing with oneself by considering the usefulness of a proposition.

“However, those of you who feel guilt because you believe you have caused your own illnesses, or who feel like failures if you cannot cure them, are giving your healing system a destructive message. You must let go of feelings of guilt and failure so that, unencumbered by these negative messages, you can utilize to the fullest your innate healing capacities.” – p.4

I guess this implies that we need to let go of the past simply because we can’t do anything about it anyway; but the future is something we can influence with the power of imagery, metaphor, and optimism.